What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

DEAL OR NO DEAL

ashton2005

New member
Sorry everyone i was trying to watch it all at the same time and got excited and didnt even check the previous post and we had a clinic appointment this pm and havent been on sorry again!!

christi
 

anonymous

New member
Christi

OOPS, I DID THE SAME THING...RECEIVED AN EMAIL EARLIER AND COPIED AND PASTED IT HERE NOT KNOWING THAT IT HAD ALREADY BEEN POSTED.

Oh well we need all of the AWARENESS....even if it is on a CF website.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

Faust

New member
I don't understand why this is important to others with CF. I doubt if someone with MD or Cancer was on the price is right, others with that ailment would really care. I just don't see why it's interesting to note that someone with a particular disease is going to be on a game show.
 

Landy

New member
For one, everyone knows what cancer & MD is, not many people even know what CF is. They've probably heard the name but don't know exactly what it is.
We are excited to get some recognition of CF. As someone else mentioned on another thread, when we hear of or talk to others w/CF some of us feel like they're family, etc.
I always like to know when someone w/CF is going to be on a show, etc. If you could care less, then don't watch it.
 

anonymous

New member
It interests me because I don't see other people with cf (or rarely). I like to compare and see how they look, what their cough sounds like...
 

ladybug

New member
I do agree with Lynda.... It is great to get the awareness out there.... Just think of how many people probably googled cystic fibrosis after she talked about it! Plus, I like to root for her knowing what she's gone through. I do know that I've known people who battled breast cancer, and when someone is going to be on a talk show, game show, etc. that have also battled it, they have watched.

I guess its inspiring in a way... not to be on the game show, but to see someone "just like you" on a gameshow and doing well..... Kinda like, if someone from my little hometown is going to be on a gameshow, you're darn right I'll tune in.... they're just like me! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Anyway, its a personal choice to watch it or not.
 

ashton2005

New member
It interests me due to the fact that CANCER is recognized nationally with their fundraising events and awareness but you HARDLY EVER see things about CF( except for here recently) so when awareness is being made hopefully more and more people will be more informed about the disease and its life thretening ailments(SP??) everyone looks at cancer and believes that their is chemo and that will fix them all but then they know that sometimes it wont. well with CF most of America dosent know or even heard of it let alone that it is life threatening.. AWARENESS AWARENESS AWARENESS is my big thing...

christi
ashton 6 mo with cf
abbi 5 yo without
 

anonymous

New member
I like to see what they look like too. Not so much since visiting this website, since many of you post pictures, but prior to the last couple months, I had only seen a couple people with cf and most of them were from the cf newsletter.
 

gsplover

New member
I couldn't believe how great she looked for just having a lung transplant two months ago. Is it common to heal so quickly?
 
I

IG

Guest
they kick you out of the hospital withing a few days (in my case nearly 2 weeks) or so after the fact. The hospital is germy they want you up and moving as soon as possible for health/exercise reasons anyway.
She is definitely post tx anyway you can tell she's on steroids, has a bit of the moon face going on. Cute though.
 

Landy

New member
I was amazed too.
Candice, were you able to dance around 2 months post tx? I think that fact amazed me. How long post tx did you have a range of movement without the incision hurting/pulling? I guess I thought it would be longer than 2 months.
 

Faust

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lynda</b></i>

For one, everyone knows what cancer & MD is, not many people even know what CF is. They've probably heard the name but don't know exactly what it is.

We are excited to get some recognition of CF. As someone else mentioned on another thread, when we hear of or talk to others w/CF some of us feel like they're family, etc.

I always like to know when someone w/CF is going to be on a show, etc. If you could care less, then don't watch it.</end quote></div>



Well I wouldn't watch it anyway because I don't watch much TV, especially network TV. I guess i'm different than most. I generally feel on my own with this disease, and kind of prefer it that way (helps me focus upon my care like it's me against the world). If I were watching channel 12 (which I wouldn't be, but just for arguments sake) and had a remote in my hand, and someone said "A contestant with CF is on the price is right", I wouldnt change to watch it. I guess from being an early poster child for CF, being involved in countless summer camps, and being close with all the CF patients in the west florida area all through growing up and into adulthood, I don't have any interest in "seeing what another CF looks like" anymore. But I agree with you guys on the awareness part for the public. The thing is though, people will put about as much stock in it as those late night feed the children ads while they are eating a big bag of cheetos.

"Hey jim, ya see this chick contestant on the right?"

"Yeah mary"?

"They say she has some lung disease...Something about roses"

"Oh?"

(forgets what he was talking about while he stuffs his face with more cheetos)
"Man I hope that hot chick on the right wins. And I hope that real hot model holding the #17 briefcase slips on stage and I get to see her boob"



Sadly that's how the average american processes the world around them, with very slight interest and empathy outside their own circle of comfort. To be honest, if we weren't suffering from it, I doub't we would care more than just slight conversation on the issue and saying "Wow, that sucks...Man can ya believe Gary at work and what he did...(goes off on tangent about work and 100% forgets about CF)"


But as I said, even if the exposure will mostly fall on deaf idiotic ears, it's better than zero exposure. Still couldn't find the desire to watch though.
 
I

IG

Guest
Yeah, I could do that. Post transplant the change is almost instantaneous with what you can do. Since I was so weak, etc, pre transplant it was a good month or so before I could walk any far distance without sore muscles. As for range of movement.. hm, it's been a while, but it was about 2 weeks afterwards that it stopped hurting (I was on tylenol #3) still felt the pulling/tightness of it while it healed though, more itchy than painful. I thought it was longer than that too, I chose to remain ignorant about a lot of things concerning transplant, worked for me at the time, but it was definitely shorter than what I thought would be required. But like I said hospitals are germy and they don't really want you hanging around that
 
Top